Not everyone is the same. Just a little bit of friendly advice: Stay calm and live your life, don't waste it worrying over something that may never happen, you know?
When my MGUS was discovered in 2003, my PCP did blood work every 4 months, watching it. In 2014, kidney problems started, and I was sent to the renal doctor, who had learned of the protein and scheduled me with an oncologist who then told me that for as long as I had the MGUS, it would be extremely rare to turn to myeloma. He did not order a bone marrow biopsy as he told my PCP he would do. In 2015, I started losing weight after retiring from work - I was happy about it for a short while. There are those signs to watch for, but not be consumed by. Myeloma was diagnosed in February, 2016.
I've walked in your shoes, know what you're saying. Even said waiting for the other shoe to drop. God has a purpose for all of us - keep your chin up and your back straight! Don't miss those glorious memories you can be making. Life is too short as it is, keep the faith! God bless all of us dealing with this!
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Re: Does the panic ever leave?
You're definitely not alone, Micki, and I hope your follow up went well.
I was diagnosed with MGUS 5 years ago at the age of 41 when a routine blood test highlighted i had a paraprotein level of 17g/L (1.7 g/dl). All I got was a letter from the hospital that I wasn't expecting, telling me I had high levels of paraprotein in my blood and they were organising some tests for me – bone density x-rays and follow-up blood tests. I have also had a full body CT scan and a bone marrow biopsy since then too.
The first thing I did when I got the doctor's letter was google 'paraprotein in blood' and went into full panic mode.
But anyway, I had my regular 6 monthly check up at the Royal Marsden in London today, which is how I ended up finding this forum.
But the truth is I spend the entire week before my impending test in a state of high anxiety. I find it very stressful. The people around me notice this too. Especially on the day, the wait between bloods and going into see the consultant.
Thankfully the news for me was good again today, and everything is stable. So I will get on with the next 6 month chunk of my life.
But please don't think you are alone
I think it's very normal to feel stressed.
Best of luck.
I was diagnosed with MGUS 5 years ago at the age of 41 when a routine blood test highlighted i had a paraprotein level of 17g/L (1.7 g/dl). All I got was a letter from the hospital that I wasn't expecting, telling me I had high levels of paraprotein in my blood and they were organising some tests for me – bone density x-rays and follow-up blood tests. I have also had a full body CT scan and a bone marrow biopsy since then too.
The first thing I did when I got the doctor's letter was google 'paraprotein in blood' and went into full panic mode.
But anyway, I had my regular 6 monthly check up at the Royal Marsden in London today, which is how I ended up finding this forum.
But the truth is I spend the entire week before my impending test in a state of high anxiety. I find it very stressful. The people around me notice this too. Especially on the day, the wait between bloods and going into see the consultant.
Thankfully the news for me was good again today, and everything is stable. So I will get on with the next 6 month chunk of my life.
But please don't think you are alone
I think it's very normal to feel stressed.Best of luck.
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johant - Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 41
Re: Does the panic ever leave?
If you have not already, consider a second opinion. The first oncologist I saw (after a fractured vertebra revealed lesions) was telling me every month that I was smoldering and just wait and watch. After some other issues concerned me, I fired this guy and went to another doctor. He said I had been full blown for at least 6 months and started aggressive treatment immediately. He took me through the entire process from that day to an autologous stem cell transplant and complete remission in 8 months.
So a second opinion will let you know that you either need a different doctor, or that you can trust your doctor completely, and either of those should help relieve the panic.
Best of health to everyone.
So a second opinion will let you know that you either need a different doctor, or that you can trust your doctor completely, and either of those should help relieve the panic.
Best of health to everyone.
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RobertC - Name: Robert
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3-2012
- Age at diagnosis: 57
Re: Does the panic ever leave?
Thank you for this message! I am waiting for my most recent blood test results. And for the last day, I've been so anxious! I go from telling myself to relax and not to worry until there is something to worry about, to feeling like every ache and pain in my body is the result of MGUS progression! I really thought that I was just a freak! I'm happy to know that I'm not the only one who is experiencing anxiety. But yes, I do realize that I need to adopt some relaxation techniques!
Thanks again for making me feel normal! And fingers crossed for good results!
Thanks again for making me feel normal! And fingers crossed for good results!
Re: Does the panic ever leave?
I'm currently awaiting a bone marrow biopsy results to see if I'm MGUS or smoldering. And it is very unnerving, each and every twitch of pain I have (I also have fibromyalgia) I think is the myeloma. 
I was so hoping that after the initial diagnosis was over the anxiety would not be so bad. I even have bad dreams about the upcoming appointment to discuss the results 
Does anyone have any tips they would like to share on coping with the anxiety other than another prescription of medicine? I have a busy schedule, working full time and taking care of the family. I am starting to take some time to work out and exercise which helps some (but with the fatigue its difficult to stay motivated) It would be very interesting to hear from others on how they cope with the anxiety and stress. 
I sure we all could use some new ideas.
I certainty hope all are doing well today!
I was so hoping that after the initial diagnosis was over the anxiety would not be so bad. I even have bad dreams about the upcoming appointment to discuss the results Does anyone have any tips they would like to share on coping with the anxiety other than another prescription of medicine? I have a busy schedule, working full time and taking care of the family. I am starting to take some time to work out and exercise which helps some (but with the fatigue its difficult to stay motivated) It would be very interesting to hear from others on how they cope with the anxiety and stress. I sure we all could use some new ideas.I certainty hope all are doing well today!
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Dippydoo - Name: DippyDoo
- Who do you know with myeloma?: Myself MGUS
- When were you/they diagnosed?: 2/9/2017
- Age at diagnosis: 49
Re: Does the panic ever leave?
I'm not saying my way is the right way for anyone. This is what is working for me. I presented with abnormal protein during yearly blood test at 45. I ended up with a hematologist t who was uninformative and spent very little time with me. I always left more anxious and confused than before I came in.
I had a bone marrow biopsy. It came back 6% plasma. She said I was fine and needed to be tested every 3 months. I didn't like the lack of explanation and my unanswered questions.
I changed to a new doctor whom I love! She explained my biopsy in detail. Clearly stated how we would proceed: test every 3 months until she could establish my pattern and then we would decide if I could cut back my testing or not.
I told my new doctor I didn't want to know the results of my tests from here on out. At first she couldn't understand this. She said "what if there is good news". I replied "don't bother to tell me because I'm not going to live my life by a set of tests numbers whether they are good or bad." I told her that if something is wrong then she obviously has to notify me, but other than that, I will come and go for my tests and live my life like every day is a good news day!
Nobody can tell me how to stop the progression because they don't know the cause. I do what I can by taking care of my physical and mental health. I am so grateful for every day I get to live this amazing and wonderful life. I'm not going to let numbers dictate my happiness. I had to take back control of my life.
So there it is. My plan. It works for me. The anxiety is pretty much gone now. I go back for my 3 month blood test in a week. I barely think about it. If she calls me after then I will know something is wrong, but I'm not on this roller coaster of poring over each and every number trying to figure out the significance the way I did for the last year and a half.
This is what is working for me now. It might change later, but this has freed me from so much worry and unhappiness. I hope you find a coping strategy that works for you. We all have to find our own path on this journey.
Be well.
I had a bone marrow biopsy. It came back 6% plasma. She said I was fine and needed to be tested every 3 months. I didn't like the lack of explanation and my unanswered questions.
I changed to a new doctor whom I love! She explained my biopsy in detail. Clearly stated how we would proceed: test every 3 months until she could establish my pattern and then we would decide if I could cut back my testing or not.
I told my new doctor I didn't want to know the results of my tests from here on out. At first she couldn't understand this. She said "what if there is good news". I replied "don't bother to tell me because I'm not going to live my life by a set of tests numbers whether they are good or bad." I told her that if something is wrong then she obviously has to notify me, but other than that, I will come and go for my tests and live my life like every day is a good news day!
Nobody can tell me how to stop the progression because they don't know the cause. I do what I can by taking care of my physical and mental health. I am so grateful for every day I get to live this amazing and wonderful life. I'm not going to let numbers dictate my happiness. I had to take back control of my life.
So there it is. My plan. It works for me. The anxiety is pretty much gone now. I go back for my 3 month blood test in a week. I barely think about it. If she calls me after then I will know something is wrong, but I'm not on this roller coaster of poring over each and every number trying to figure out the significance the way I did for the last year and a half.
This is what is working for me now. It might change later, but this has freed me from so much worry and unhappiness. I hope you find a coping strategy that works for you. We all have to find our own path on this journey.
Be well.
Re: Does the panic ever leave?
Thank you Maple Tree, I do love your attitude. Sometime in the near future I hope I can find a place similar to yours. I think you're on track with thinking your trust in the doctor helps with the peace of mind we all need and long for with this or any condition that can be serious. After all, not many people are willing to trust a total stranger with their life. That's why most try crunching the numbers and become 'experts ' themselves. My hematologist seems more nervous then I am, Lol if that's even possible ! I have had a few not so good doctors in the past, but I do have plans in the near future to replace my GP and find a myeloma specialist .
Wishing everyone good health today!
Sometime in the near future I hope I can find a place similar to yours. I think you're on track with thinking your trust in the doctor helps with the peace of mind we all need and long for with this or any condition that can be serious. After all, not many people are willing to trust a total stranger with their life. That's why most try crunching the numbers and become 'experts ' themselves. My hematologist seems more nervous then I am, Lol if that's even possible ! I have had a few not so good doctors in the past, but I do have plans in the near future to replace my GP and find a myeloma specialist .Wishing everyone good health today!
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Dippydoo - Name: DippyDoo
- Who do you know with myeloma?: Myself MGUS
- When were you/they diagnosed?: 2/9/2017
- Age at diagnosis: 49
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